Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

'patients Become Experts'
0

17 posts in this topic

A lot of my friends here at uni are medical students and happened to be studying coeliac disease when I was diagnosed. They are amused by my growing medical knowledge and while revising for their midway exams one of them pointed out that their textbook actually states that 'patients become experts in their symptoms, causes and care'. Couldn't resist explaining to them that this was because so few of them are ;) On the plus side, they all seem pretty clued up on it so let's hope it stays that way when they are practicing! 

0

Share this post


Link to post
Share on other sites


Ads by Google:

It is good to know that they are getting this at school-at last.  I have a daughter studying to go to Med School. 

 

Ha!  My MD told me once that she always grabs her computer before coming to talk to me.  She is afraid I will ask too hard of a question!  Yeah, one learns their disease from the inside out.  I feel driven to study and understand, so that possibly I can get relief and optimize what is left!

 

D

0

Share this post


Link to post
Share on other sites

Haha yes my doctor originally thought I was a medical student too! Funny. I just hope they don't see this as shifting the responsibility for treatment etc to us patients (or doing so 'formally' as many of us seem to do it anyway!) 

Yep, they do seem to be getting a good grounding on it, specifically because it is being diagnosed more and more. 

0

Share this post


Link to post
Share on other sites

My current PCP has told me more than once that she " needed to do some research" because of things  we were dealing with. She has acknowledged ( more than once) that I knew more about things I am dealing with then she does.

That is why she is my PCP   ;) she is not afraid to say she  doesn't know and lets learn together .She is a keeper :D

0

Share this post


Link to post
Share on other sites

This thread made me giggle.  During my first year post dx my celiac doctor asked me where I worked ... at the time I worked only part time at a top research/graduate school.  He then asked what my area of research was as we had had several very lengthy scientific conversations regarding celiac, fibromyalgia and other AIs and I always brought him copies of interesting papers I found on PubMed....his face was priceless when I told him my degree was business, my profession was prop mgmt but I was.working part time in admin as my health limited my ability to work.

 

Very very very glad to hear medical schools are starting to educate future doctors with regard to celiac...it's about time!!!

 

Would have been nice to have been diagnosed while I still had a thriving business.

0

Share this post


Link to post
Share on other sites




I hope that more doctors are taught so that they will stop dismissing the concerns of their patients.  I was told a story last night of a young woman who had gone to doctors several times with stomach pain and diarrhea and was told that her symptoms were psychosomatic.  She later died of colon cancer at age 32.  It's sad.

0

Share this post


Link to post
Share on other sites

When I was diagnosed (10+ years ago), my doc suggested I call the dietician/nutritionist at the hospital for food advice. By the time I got to her and we talked, she told me I already knew way more than she did about being gluten free.

1

Share this post


Link to post
Share on other sites

I hope that more doctors are taught so that they will stop dismissing the concerns of their patients.  I was told a story last night of a young woman who had gone to doctors several times with stomach pain and diarrhea and was told that her symptoms were psychosomatic.  She later died of colon cancer at age 32.  It's sad.

I agree - there are a few students I've met who I wouldn't be happy being treated by. However, it's taught me to be skeptical of doctors and go with my (grumpy) gut!

0

Share this post


Link to post
Share on other sites

never did I think reading articles on PubMed would become a hobby.  In fact, I didn't even know what PubMed was before joining this forum.  I gave my GI doctor the World Gastroenterology Report which discussed DGP IgG and its relationship to celiac, and at my last appointment last week it was clear he had been doing his own research.  Change is a great thing!

1

Share this post


Link to post
Share on other sites

My practitioner told me she went to the doctor she works and said, "Now what do I do, she knows more than I do about it."  I didn't hear how he replied.  The thing about what I know is that is very directed toward my specific symptoms.  I am missing a broad overall view of what is going on in the body, how things work together, and where to look for correct information that is helpful.  It is so good to have someone to bounce ideas off of and they will in turn try to educate themselves.  Nobody can be expected to know it all.

 

D

0

Share this post


Link to post
Share on other sites

Not sure if this sad or positive, but I'm finding the "patients become the experts" to apply to many medical issues these days.  Positive because patients are able to be so well infomed now, mostly thanks to the internet, but also quite sad and frustrating to go to the doctor when having a medical issue and coming to the realization that you know more than your doctor about it.  We're having this issue with my husbands struggles with getting off a prescription medication.  They know how to prescribe but have NO IDEA about coming off of it safely.  Thank goodness for the internet and forums like this. It's scary to imagine where my family would be right now if we had continued to follow doctors orders!

0

Share this post


Link to post
Share on other sites
Nobody can be expected to know it all.

 

Very true.  Seems as though we're reaching an age where more specialists are needed in more fields, and should be relied on much more heavily.

0

Share this post


Link to post
Share on other sites

But you know, GI doctors are SUPPOSED to be experts in the field of GI illnesses, yet how many folks right here have complained about GI doctors who know NOTHING about celiac, nor how to test for it? That is inexcusable, especially considering all of the recent attention to the illness. You would THINK that these doctors would investigate all of the new information about it. But I guess that would be asking too much. <_<

0

Share this post


Link to post
Share on other sites

I truly believe that if there were a magic pill that pharmaceutical reps could advertise/push onto doctors for symptom suppression, all GI doctors would know how to properly test for celiac.  that's my two cents  :)

 

But you know, GI doctors are SUPPOSED to be experts in the field of GI illnesses, yet how many folks right here have complained about GI doctors who know NOTHING about celiac, nor how to test for it? That is inexcusable, especially considering all of the recent attention to the illness. You would THINK that these doctors would investigate all of the new information about it. But I guess that would be asking too much. <_<

0

Share this post


Link to post
Share on other sites

My very savvy celiac GI doc told me flat out "You know more about this disease than any of my colleagues. Please, write a book"

 

(I will) But why did I have to almost die and figure this shyte out for myself? My own PCP doc has 3 kids with celiac, for pete's sake. He symptom treated me for 12 years!Sent me to dozens of specialists.

He "did not know how it manifests in adults", he said after the fact.

 BS!! he should know (he knows now, I assure you)

 

Not bragging, just telling the truth. I said  to my GI doc..."But, this is very sad, doc. What can we do to promote celiac awareness?  no one should go unDxed for 20, 30, 40 years..."

He said "Just keep doing what you do,"

 

I love him because he receives all the articles I send with excitement and has accepted all the people I send to him.... and 7 out of 8 were celiacs and one has ulcerative colitis with NCGS,

 

I know one when I see one....

and I did not go to medical school.

0

Share this post


Link to post
Share on other sites

I look for the super bloated belly  :)  Would you agree that any man with a beer belly probably has celiac disease or NCGS?

 

I know one when I see one....

and I did not go to medical school.

0

Share this post


Link to post
Share on other sites

I look for the super bloated belly  :)  Would you agree that any man with a beer belly probably has celiac disease or NCGS?

 

lol  I do not think I would not necessarily assume that. If he is a beer drinker, he's probably got beer belly, but it does not exclude anything either.

 

I know plenty of chubsters (i was once one myself) who could be celiacs, for sure. One of the biggest mistakes doctors make is

thinking "you can't have celiac if you're overweight".  WRONG!

 

The other is "But no one in your family has celiac, so why would you?"...well, duh, someone has to be diagnosed first for it to be 

a documented familial disease. I bet most of us are the "first" but you can be sure you are not really the 'first" at all. 

The ones before us were just undiagnosed all their lives. (like my Dad) 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,688
    • Total Posts
      921,757
  • Topics

  • Posts

    • Do you mean something like a protein powder you could mix up?  A lot of them in the US seem to be gluten free.  Maybe just go to your local store and read all the labels?
    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
    • Hi everyone, I am doing job in restaurant at evening 5 to 12 during working hours no time to do a dinner. I'm thinking to make a shake but don't know the gluten free vitamin or supplement brand which one is good for me and easily available in Berlin Germany to make me fit cause last one week i feel weak. I'm 28 year old. Sincerely
    • Hey there just wanted to warn anyone that has other allergies- these crackers may not be a good choice! I'm mildly sensitive to MSG- I only react if there's a giant amount like in Chinese food or Ramen noodles, etc.  I literally have a to eat TONS of a the offending food before reacting.  Anyway, I was excited to try these Trader Joes pumpkin crackers, kept hearing about them on the radio .... and they're gluten free!  (I have Hashi's).  I ate about 3/4 of the box last night. Woke up this morning with a red itchy face and nasal congestion, headache, anxiety. Hallmark symptoms for me of high MSG intake. (It does say yeast extract on the side but it's pretty far down the list). So if you're sensitive.... stay away! Apparently these particular crackers are loaded with it. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,692
    • Most Online
      3,093

    Newest Member
    EllianaEthan
    Joined